Science & Medicine

MPNforum’s TSR: 10 MPN Heroes in 2014

Put on your clown nose and top hat because what now looks like Incyte’s Annual Hero Charade is about to step out smartly in lockstep with September’s traditional Blood Cancer Awareness Month

There’s not much more to say about Incyte’s self-serving MPN Heroes program. Basically, a drug company profiting mightily from its over-priced MPN product builds its market with a show of honoring their heroes. To help in the process the company selects an “independent” panel whose qualifications aren’t immediately apparent which then selects MPN heroes, several of whom are unknown to us.

A disaster right?

Wrong!

Thanks in no small part to the brilliance of Incyte marketing guru Pamela Murphy, her team and a couple of choice picks this particular sow’s ear made a spectacular silk purse at New Orleans meeting of the American Society of Hematology last year,

I visited the Wall of Heroes booth on the ASH exhibit floorwith its TV monitors playing loops of heroic interviews and its exhibition walls displaying colorful art work. On the exhibit floor were several Heroes. Ashley Gould was there, a hero to all of us for driving the 23andMe MPN research program and tirelessly working to support her father, Harvey, and other myelofibrosis patients.

And Dr. Ruben Mesa, who needs no introduction, was up on the Heroes display monitor. Dr. John Mascarenhas, briefly part of the MPNclinic, showed up at one of the other exhibit booths and revealed he too was a Hero. I may have run into other Heroes but wouldn’t have known. Maybe you do. Check out the page and see if you recognize them.

So let’s be cold about all this. Gross PR or not, why shouldn’t patients select their own real heroes? And get them a free trip to West Coast?

(So far as I know Heroes and a guest get a free ticket to San Francisco and hotel accommodations at ASH and pretty much all they have to is appear at the dinner honoring them, no flying around wearing capes or anything like that. They also get to name the nonprofit to which they want Incyte to donate funds but, as one Hero found out the choices are limited. Full disclosure: Her choice of MPNforum was declined by this magazine which, in any case isn’t on Incyte’s acceptable list.)

TSR Recommends– Ten Unquestionable Heroes in 2014

Ian Sweet

(Posthumous award) for long, brilliant and unstinting patient service both within the MPN-NET daily support list and through direct personal and on-line support of thousands.

Diane Blackstock

For daily, continual loving support of her large Myelofibrosis Facebook family and vast extended community of MPN patients. Despite her serious MF and participation in several clinical trials, Diane has been the MPN community’s reliable go to person for everything from plastic bracelets to advice, prayers, and love.

Dr. Richard Silver

For lifetime achievement in MPN research and clinical work, for pioneering interferon research, for compassionate patient care, teaching, writing, and funding MPN research through the foundation he founded.

Chris Harper

The primary stem cell transplant buddy of the British Empire whose work in the United States extends to every SCT patient who calls upon him.

Robert Kralovics and Tony Green (shared)

for scientific achievement in identifying the calreticulin mutation and contributions to scientific MPN literature.

Barbara Vanhusen and Robert Rosen (shared)

whose uncompensated leadership of the MPN Research Foundation has funneled over $9 million into basic research and played a role in every major MPN research development in the past decade.

Barbara Kurtz

caregiver and long-term ET patient who cared for her husband through his series of incapacitating strokes while administering a popular Facebook page.

And highly deserved. Doubt there would be much argument about that. Throughout your trials you displayed incredible courage and generosity — and some pretty good writing chops in your Journal — giving hope to many of us. If there’s any reality to that flawed program, you’ll be standing up there with Ashley Gould and Dr. Ruben Mesa in December.

I have not yet shared with you my comments to Incyte — specifically about their MPN Heroes program — when I participated in their market research program in which they spoke with MPN patients about Jakafi advertising. I explained that many of us are a bit cynical about the program… and why. They definitely listened. I doubt it will make an impact, but it felt good to take our opinion to the source.